Wednesday, 5 October 2011

Best Day Ever

Do you ever wonder what it would be like to wake up in a different life? Not necessarily a different person, just things in your life would change. I often wonder what it would be like to wake up RA free. I don’t wish to win the lottery or live in a mansion or anything, just to wake up one day without the instant feeling of pain and knowing that it may never change. Obviously some days it gets better after waking, but I instantly know from the moment my eyes open for the first time. I am constantly reminded when I wake of a condition I know I will still have by the end of that day. It would be lovely to know that feeling of not worrying what struggles lie in the day ahead. It would be nice to know that I can do everything I want to do, without hassle or pain or difficulty. To wake and know that today, like always, can be a good day. To have that control back would be truly amazing.

I don’t wish that I never had RA; in fact I think the experience of living with it has made me a stronger person and I am much more aware of peoples suffering now. I think it has made me mature as a person, think about others more and try to live every day to the full. Those revelations I will always treasure from living with RA. It’s not until you know suffering yourself that you can understand what others may be going through. I don’t miss my naivety and sheltered life. I believe I was a selfish person before all this happened, some might say I still am but I hope not. I try to consider others before making decisions, make time for my friends and family and make sure they know how much they mean to me. I want to help others in my situation, because if I don’t you can’t be sure someone else will who truly understands.

I often daydream of a life without suffering from now on. I imagine that tomorrow I will wake up and a miracle will have happened and my body just returns to normal, without the need for drugs or to try new treatments. RA vanishes and leaves behind a more confident, ambitious and considerate individual. Wouldn’t it be nice hmm? Well day dreaming seems to be one thing getting me through this week. It’s been tough and I am fed up. Completely fed up if I’m honest. Some days I just get so frustrated. It started today with not being able to turn on the tap. After struggling for half an hour and just about getting to the end of my tether I managed to loosen it and run my bath. The bath went to waste anyway because I couldn’t actually bend down to get in it, and there was the fear that I wouldn’t be able to get out. I was home alone. I cried sat on the edge of the bath. Then I felt stupid and had a shower instead. I really wanted that bath, though.

I couldn’t open a jar of jam at work, or lift the boot of my car open and then I went to queue up amongst about a thousand pensioners for my flu jab. Each and every one of them starred at me, probably trying to figure out why I was there. ‘A young person, look!’ I could almost hear them chant. That made me angry. You’re not the only ones entitled to a flu jab you know. I wasn’t feeling the best anyway so to be on my feet for half an hour whilst the nurse whittled her way through the sea of grey didn’t make me feel much better. When it was finally my turn, of course, I was asked why I was there. I almost wanted to say just for a laugh, thought id pop in and get jabbed for no reason at all. But obviously she didn’t know my history or anything so it was hardly fair to be rude to her.

My arm bloody hurts. Luckily they jabbed me in the same arm where my wrist is now dropping to one side after weeks of being in pain. My shoulder on that side is also grinding and causing me to nearly pass out when I try to lift my arm up. Brilliant stuff. I suppose I have one ‘good’ arm at least. Not that it helped the jam jar or car boot situation.

When I finally completed the things I needed to do today, bake several cakes, do a little bit of shopping, get petrol (again, all very difficult with the use of only one arm) I collapsed on the sofa at home at 2pm. I had many things I could be doing, but couldn’t, and I was mad because I was bored. I starred at the TV for a bit and decided it was a great time to clean the house. Of course there is no great time to clean the house but boredom and frustration set in and I couldn’t just sit there anymore. Of course I made things worse and tears and anger followed as I tried to vacuum the stupid carpet with one arm and bashed my bad knee. I gave up. There was no way I was getting the sodding thing up the stairs anyway. I did the dishes, forgetting my wrist splint was on which then got soaked. I only have one wrist splint so now, hours later, I am still sat here with a soggy splint irritating my skin as I have no means of drying it and can’t take it off because my wrist hurts so much.

There are many other things I could tell you about this stupid day, but I won’t bore you with the details. I did throw a few things and the cat was quite scared at one point but you get the gist. To sum up, I am annoying myself and there is pretty much nothing I can do about it. Oh and to top it off my hip hurts. Yep, the hip I had replaced to solve all my problems. Problems not solved. Have a lovely day.

Dear rheumy, Let me start by saying I do enjoy your blog. I am 47 and diagnosed with RA 1 year ago, but problems for at least 3. also get the honor of sjogrens and lupus. Had extensive back surg 13 years ago that they NOW want to say was prob AS.

IT, all of IT SUCKS!! But let me tell you what I read in your post. You DID get the tap on, you figured out a better plan and took a shower, even though you were alone. You managed to deal with the boot issue with your car. You recognized the need for the flu shot and did it! You didn't put it off. You baked cakes, therefor furthering your business. You did shopping, got gas, vacuumed, cleaned and did dishes. All with a sore wrist, hip, shoulder and body. Sounds like the stuff a super hero is made of. GIVE YOURSELF CREDIT for what you do do, what you have accomplished. You sound like an incredible young woman. Stop kicking yourself. No one else is. I get upset everyday too. Then my husband says these same things to me. It's starting to sink in slowly. So, I'm sending you a hug from Michigan is the USA. I hope I can give you one in person one day, and have some cake!! Hang in there

Interesting blog this is the first time I've read it, funnily enough because I have some time on my hands as I'm off sick trying yet another cocktail of drugs! I was diagnosed when I was 11 years of age and here I am 40 years later and I can relate to the same frustrations you write about, they haven't lessened, I STILL get on my own nerves regularly but I can also laugh at myself afterwards. Keep going... :)

I'm so glad I came across your blog today. I'm 22 and have had RA since I was 19. I struggle day to day and some days just can't accept that it will never go away. I definitely relate to your frustrations and it made me feel much better knowing I'm not the only one going through this. Thanks for sharing!

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)